Mobility tips for people with Usher

If you have Usher syndrome and your vision changes gradually, you may make adjustments without being fully aware that you are doing so. For example, you might hold on to a friend or partner when coming out of a building at night, or you might move your head from side to side more than usual, in an attempt to scan for obstacles on the pavement.

There are some other simple things that you can consciously do to improve your own confidence and help you to move around more safely and independently. These tips have been compiled by Sense's National Usher Coordinator who has ten years of practical professional experience in the field.

Walking outside

Get to know regular routes in daylight

Familiarising yourself with a route over time will enable you to learn where obstacles are, such as street signs, steps, crossings, bollards and kerbs.

Plan your route

Try to plan a route to avoid heavy traffic and busy pedestrian areas, particularly during the rush hour. One-way streets may be easier to cross, as may streets with wide traffic islands. Tactile surfaces (bumps) on the pavement indicate crossing points. One individual with Usher, who is familiar with the technology, suggests doing a virtual 'dry run' of an unfamiliar journey using Google Street View on a computer. He finds this helps him to identify useful landmarks on the journey.

Avoid areas with low light

Even in busy urban areas outside lighting levels vary considerably. For example, it might be easier to walk at night along a shopping street with brightly lit window displays, than along a residential road.

Use pedestrian crossings

Pedestrian crossings offer a safer alternative to crossing a road than elsewhere. They are generally well lit and allow drivers to anticipate that somebody might be crossing. When using a Pelican Crossing, ensure that the green man has appeared (this is often accompanied by an audible signal) and double check that traffic has stopped. Pelican Crossings sometimes have a small rotating cone underneath the push button box. You can hold the cone and when it starts to turn, you know that the green man is showing and it should be safe to cross. However, it is also important to beware of such hazards as emergency vehicles or cyclists coming up the inside lane of the traffic.

Walk at a steady and even pace

We are all liable to bump into people on the street who weave from side to side or stop suddenly in the middle of the pavement. Walking at a steady and even pace allows others to anticipate your movements and keep out of your way. Try to walk down the middle of the pavement, as this is more likely to be free from obstructions.

Use residual (remaining) vision

Many people with Usher have some useful central vision. Moving your head to scan from side to side and up and down may allow you to anticipate obstacles. However, this also requires a lot of concentration and can be very tiring.

Consider using a cane or mobility aids

Moving around outside after dark

Walking around outside in dull or dark conditions can be particularly challenging for people with Usher. However, there are some simple things that can help:

Give your eyes time to adjust

When leaving a brightly lit place at night, give your eyes time to adjust. This may take five minutes or longer for somebody with retinitis pigmentosa. Equally, when going into a building, particularly on a sunny day, it can be useful to safely stop somewhere to allow your eyes to adjust.

Be visible to other road users

It is important to ensure that road users and other pedestrians can see you. It helps to wear something that is white, brightly coloured or reflective, for example a pair of fluorescent trainers or a jacket. The fluorescent armbands or belts often worn by cyclists are particularly visible and are widely available at a low cost.

Carry a torch

Some people with Usher like to carry a small torch with them. This can be useful, for example, when walking in dark areas, reading the timetable at the bus stop or finding the keyhole on your front door. Most smartphones now include a torch function which can be a useful back-up.

In bright conditions

Bright sunny conditions can be equally challenging for somebody with Usher. An optometrist - either at the hospital eye clinic, or at a high street optician – should be able to advise on dark or tinted glasses that can help in these conditions. Red lenses are particularly helpful in blocking out glare. A hat or visor may also be helpful.

Using a communicator guide, guide or support person

Many people with Usher use a sighted guide at some time, perhaps at night or when travelling in an unfamiliar area. This person might be a paid worker who has had formal training as a sighted guide or Communicator Guide, or it might be a friend or family member who offers to help.

Some tips for walking with a sighted guide:

Your guide should have an understanding of Usher syndrome and your individual needs. For example, it is important that they understand that you may see well in certain lighting conditions and have greater difficulty in other conditions, or that you have a problem with balance that affects your mobility.

You and your guide should agree on how to communicate while moving about. For example, if you have Usher Type 2 and use hearing aids, you may not be able to follow speech in a busy outdoor area and may prefer to receive communication using the deafblind manual alphabet, for example.

You also need to negotiate a signal system. For example, when the guide’s arm is raised, this means that they will be going upstairs; when they move their guiding arm behind their back this indicates that they are approaching a narrow gap.

Agree a guiding position with your guide. For example, you may prefer to take the guide’s arm gently at the elbow or may prefer to put your hand on the guide’s shoulder.

It is important for you to trust the person guiding you and feel that the guide is confident in what they are doing. This trust may be established through training and by individual discussion, negotiation and constructive feedback.

Formal sighted guide training is provided by most local and national organisations working with visually impaired people. Please contact the Usher Team at Sense, or your local Sense office, for advice on where to access such training.

Transport

Most people with Usher will be eligible for support with the cost of travel. For example:

Disabled Persons Railcards - this allows a companion to travel at a reduced rate too.

Individual airlines and railway companies will offer assistance to disabled travellers by arrangement. It is advisable to request this assistance well in advance of your journey.

Usher identity changes

It is common for people with Usher to be in denial about their sight loss, and sometimes they may feel they do not want to use a mobility cane, a guide dog or other aids that are available to them. People with Usher have reported experiencing feelings of depression, anger and embarrassment at the ‘shame’ of using any mobility aids. This is very normal and is a process which everyone faces in their own time. People with Usher who go on to use a mobility aid or aids are likely to come to appreciate the freedom and independence it can give them.

An added possible disadvantage of not using any type of mobility aid is that other people will not be aware of their Usher as it is not ‘visible. Some would argue an added benefit of using a mobility aid is that it makes their disability 'visible'.

Financial support around mobility

Grants:

Disabled Facilities Grant (DFG) – this is a grant of up to £30,000 which can be used to adapt your house to meet your access needs, for example lighting, hand rails, steps, wet room. This grant is dependent on your income and savings.

If you are not eligible to receive the Disabled Facility Grant, you may be able to apply for small adaptations grant from your local council for equipment or minor adaptations up to £1,000.

DLA / Personal Independence Payment (PIP)

Applications can be made to receive financial support for travel and transport cost through PIP, a non-means tested welfare benefit that is replacing Disability Living Allowance (DLA).

Created: February 2016

Review due: February 2018

First published: Wednesday 2 December 2015Updated: Monday 16 January 2017